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Patient and service user engagement in research: a systematic review and synthesized framework

机译:患者和服务用户参与研究:系统评价和综合框架

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摘要

BackgroundThere is growing attention towards increasing patient and service user engagement (PSUE) in biomedical and health services research. Existing variations in language and design inhibit reporting and indexing, which are crucial to comparative effectiveness in determining best practices.ObjectiveThis paper utilizes a systematic review and environmental scan to derive an evidence‐based framework for PSUE.DesignA metanarrative systematic review and environmental scan/manual search using scientific databases and other search engines, along with feedback from a patient advisory group (PAG).Eligible sourcesEnglish‐language studies, commentaries, grey literature and other sources (including systematic and non‐systematic reviews) pertaining to patient and public involvement in biomedical and health services research.Data extractedStudy description (e.g. participant demographics, research setting) and design, if applicable; frameworks, conceptualizations or planning schemes for PSUE‐related endeavours; and methods for PSUE initiation and gathering patients'/service users' input or contributions.ResultsOverall, 202 sources were included and met eligibility criteria; 41 of these presented some framework or conceptualization of PSUE. Sources were synthesized into a two‐part framework for PSUE: (i) integral PSUE components include patient and service user initiation, reciprocal relationships, colearning and re‐assessment and feedback, (ii) sources describe PSUE at several research stages, within three larger phases: preparatory, execution and translational.Discussion and ConclusionsEfforts at developing a solid evidence base on PSUE are limited by the non‐standard and non‐empirical nature of much of the literature. Our proposed two‐part framework provides a standard structure and language for reporting and indexing to support comparative effectiveness and optimize PSUE.
机译:背景技术在生物医学和健康服务研究中,越来越多的关注增加患者和服务用户的参与度(PSUE)。语言和设计的现有差异阻碍了报告和索引编制,这对于确定最佳实践的相对有效性至关重要。目的本文利用系统综述和环境扫描来为PSUE建立基于证据的框架。使用科学数据库和其他搜索引擎进行搜索以及患者咨询小组(PAG)的反馈。符合条件的来源英语研究,评论,灰色文献以及与患者和公众参与有关的其他来源(包括系统的和非系统的评论)生物医学和卫生服务研究。提取数据研究说明(例如参加者的人口统计学,研究环境)和设计(如果适用); PSUE相关工作的框架,概念或计划方案;结果总体上,包括202个来源并符合入选标准;获得了PSUE发起和收集患者/服务使用者的投入或贡献的方法。其中41个提出了PSUE的一些框架或概念。资料汇总为PSUE的两部分框架:(i)PSUE不可或缺的组成部分包括患者和服务用户的发起,对等关系,协作,重新评估和反馈;(ii)资料在三个较大的研究阶段中描述了PSUE。讨论和结论努力建立基于PSUE的可靠证据的努力受到许多文献的非标准和非经验性质的限制。我们提议的两部分框架提供了用于报告和索引编制的标准结构和语言,以支持比较有效性和优化PSUE。

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